Hope and help for triple-negative (TNBC) and other forms of hormone-negative breast cancer.

Wednesday, August 18, 2010

A New Medical Adventure: No Stroke, No Cancer in the Brain, No Idea What Was Wrong

It’s about 170 miles from Walsenburg, Colorado to Denver.The trip takes less than an hour in a helicopter.I know, because I was airlifted from the Spanish Peaks Medical Center outside of Walsenburg to St. Anthony’s Hospital in downtown Denver on June 18, 2010.Docs thought I’d had a stroke.Ultimately, they decided I hadn’t, but they aren’t sure just what was wrong with me.

Two months later, I am still fine, although perplexed about what exactly happened.

As I flew over Pueblo and Colorado Springs that clear June night, my main worry was that the cancer had returned in my brain—which is a common site of recurrence of hormone-negative breast cancer.I was amazingly tranquil about the possibility—I was ready to accept the inevitable.That was probably the Valium they had given me, though.To skip ahead, the cancer had not returned.

Yea!But what the what was going on here?

The reason we headed to the emergency room in Walsenburg earlier that evening was that I was extremely lightheaded, weak on one side, had trouble breathing, and felt like I was about to pass out. This had been coming on for more than an hour while I puttered around our mountain cabin trying to hydrate myself, thinking it was dehydration and trying to snack, thinking it might be a blood sugar issue, although I had no reason for concern about either problem.

Once I was hooked up to the machines that became part of my body for the next 20 hours, another symptom popped up: My blood pressure, which normally is low (110/65) shot into the danger zone (145/109).

I also wasn’t terribly articulate—I kept telling the doc in Walsenburg that I felt “weird” and, when he asked for specifics, I repeated my weirdness.He asked my occupation and, when I told him I was a retired journalism professor and a health writer, he seemed to think I should speak clearer than that.

Weird, huh?

The doc asked me to say “Mississippi” and I remember working hard to articulate, as though I were drunk.He then asked me to say “Four forty four fours.”I told him I never have been able to pronounce “r”s well, and that my brother used to tease me when I said “poach.”

“But there are no ‘r’s in poach,” he said.

Later, I realized I should have clarified that my brother teased me because I had been trying to say “porch.”

So he added that illogic to my weirdness and my physical symptoms and told me I needed to go to a stroke center and the closest was in Denver.

“We’ll helicoper you,” he said.

“Yikes,” I said.

The copter came from Pueblo with two excellent paramedics who strapped me onto a board and loaded me right next to the pilot.My feet were touching the front of the glass bubble. To my left was nothing but glass and sky; the pilot was to my right.I could see his GPS system showing us where we were and where we were headed.

Or, rather, I could have seen it if I’d had my glasses. I was blurry-eyed, though, because I could take nothing on board with me—not my purse, shoes, watch.The only possession I maintained was my underwear—and it, of course, was old and slightly tattered. I had been at a cabin in the wilderness and felt no need for fancy pants.Too bad.I was a stereotype—in the hospital with crummy undies.

I had multiple tests.A CAT scan in Walsenburg showed my brain was OK, but the doc worried that the machine was not precise enough and, if I were at risk of a stroke, he wanted to prevent it.In Denver I had a second scan, this one including the arteries in my neck.Then I had a brain MRI and an echocardiogram.All were normal.

At 2 a.m. I finally saw a doctor who told me he did not think I’d had a stroke, but that they wanted to keep me for observation because they didn’t know what the problem was.I was transferred from ER a hospital room where I fell happily asleep for an hour and a half—until a nurse came to draw my blood.

Meanwhile, my husband had driven up to Denver, stopping in Pueblo to pick up my sister, who I knew would keep him awake during the trip.They arrived pie-eyed from lack of sleep.My husband had had no dinner.He finally ate later in the morning, 16 hours after his last meal.My sister brought me a change of clothes, but my husband had the same work clothes he wore when he drove me to the hospital.

The neurologist finally visited in early afternoon and we talked about my medical history.I mentioned the breast cancer and he ordered a second MRI with a more precise reading, to see if the cancer had spread.It hadn’t.

As I said, “yea!”But I still had no idea what my problem was.Nor, apparently, did the doctors. The only out-of-whack reading in all my tests was a slightly low potassium level.

By 4 p.m. my blood pressure was back down to normal and the docs saw no more need for me to be hospitalized.The concluding diagnosis: a complex migraine.That sounds to me like a fallback position—better than saying, “We have no idea.” I did some research on complex migraines and remain unconvinced.I had only a slight headache—not migraine-level.

So, I was released and we headed back to our mountain cabin, subdued, concerned, and confused.

For several weeks afterward, I was leery of my health.As my husband and I hiked, I was haunted by the possibility that my head or my heart or my something would go out and—whap—I would die face down in a cow pie.I felt fine, though, and we intensified our hikes and I continued to feel fine.

I now have decided that I am, in fact, fine.

What happened?I will continue to ask that questions and, eventually, I might find an answer.Some speculations:I had fractured my arm three weeks before and the fracture contained some trapped blood.Had it come loose and moved toward my brain, but broken up before it did damage?The docs, though, seemed unconcerned about any connection between my symptoms and my arm.

Or another: We had been in town that day and I’d had more than my usual caffeine.I had three diet Cokes with lunch. Plus, I think the decaf coffee I ordered actually had caffeine—two shots.And the temperature was in the mid-90s.Could I have had dehydration plus excess caffeine?Low potassium is one sign of dehydration.

Because my symptoms were classic ones for stroke, I think the docs looked for the obvious and did not evaluate the more esoteric issues.That appears to be another medical mystery for me to solve.

I am on the case.

The total bill for the little event is not in yet, but so far the costs are a bit over $22,000—and that does not include the helicopter.I have great insurance, which will cover most of it.I do wonder if I would have been given less treatment if I were less well insured.And if that might have led to actually finding what was wrong.

6 comments:

I had a glitch in my sight a few months ago. It was just a couple of minutes of blurred vision. I freaked out since I have a piece of scar tissue in that eye, and was afraid it had grown larger. But my eye doctor assured me it hadn't changed and instead said, "migraine." I'm dubious. Like you said, it seems to be a fall-back diagnosis.

Rachel: How did you get scar tissue in your eye in the first place? And I am so very glad you are fine as well. It is just disconcerting, isn't it? I am thinking of pitching an article about dubious diagnosis--complex migraines, irritable bowel syndrome....

No one knows how the scar tissue got there, either. (What do doctors know anyway?) Some think I looked at the sun too long, but I don't usually make a habit of that. Some think I'm so near-sighted that it stretched my eye and tore. Still others think maybe it was histoplasmosis.

All I know and care about is that it's there and never gets any bigger!

I came across your blog from Holly (OJO from NOHO) and thought I'd share with you a similar situation that I experienced.

In 2006, at the age of 52, I endured 6 months of having spells of lightheadedness, feeling "weird", weakness and numbness on the right side of my face, trouble breathing, difficulty in speaking let alone finding the right word. I could see the word in my mind, but couldn't say it. Or when I did say "a" word, it wasn't the correct word (I called my kids "pigs" a few times much to their dismay).

Over the 6 months, I had numerous medical tests and worked with an ENT doctor and two neurologists. None could come up with a conclusive diagnosis.

I experienced a "white out" at work one day and paramedics rushed me to the ER. . . .they just knew I was having a stroke. Again, no conclusive diagnosis by the ER doctors. Luckily, tho, they scheduled me with a third neurologist who said it was a "silent migraine" also known as a acephalgic migraine.

Here's a hyperlink to an article that really helped me to understand the diganosis: http://www.healthcentral.com/migraine/types-of-headaches-38003-5.html

Within an hour of each spell, I would start to smell coffee grounds (the aura phase). Seldom had a headache during the spell and never a headache at a migraine level.

Two days ago, I had my first silent migraine since 2006. I took the migraine medication and knocked the migraine out within 2 hours.

Renee: Thanks for the link. One reason I posted this was in the hopes that others might help me solve the mystery. Interestingly, the docs did not give me anything for migraine. Only told me to take an aspirin a day. We are still in Colorado, but when I get back to my doctor, I will try to get some clearer answers. I do not want to go through it again. And congrats on two years!!!!!!!!!!!!

DONATE

Please help support this blog. All donations go to time and resources to maintain this rich source of information about triple-negative breast cancer.

Donate in the name of a friend or family member with breast cancer and I'll send a personal note of encouragement to her or him.

Surviving Triple-Negative Breast Cancer: Hope, Treatment, Recovery

Finally! A book about TNBC written by a woman who's been through it—Patricia Prijatel, founder and editor of this blog. If you like this blog, you'll love this book.

Patricia Prijatel

Founder of Positives About Negative and author of Surviving Triple Negative Breast Cancer

Top Cancer Blog

From Symphony Sisterhood

There was an error in this gadget

Welcome

When I was diagnosed with hormone-receptor-negative breast cancer, I required a positive attitude of myself—I was not going to let a disease have the upper hand. I hope I can share some at that attitude with you while I offer what I have learned in my trek through this disease as a patient and medical writer.

It's a given that life ends in death. Cancer just makes you face that inevitability more directly than you might have before. To me, that means living fully right now.

Three Mountain Dogs, a children's book by Patricia Prijatel

Triple-negative breast cancer (TNBC) lacks hormone receptors for estrogen, progesterone, and Her2/neu. It affects about 20 percent of all those with breast cancer. This blog offers information and hope for those with TNBC and other forms of hormone-negative breast cancer.

Calm Spirit Note Cards

Blank greeting cards with the Calm Spirit image are available in packets of 6. They're ideal for sending a personal message of encouragement to anyone living with cancer. Boxes of six are available for $10.00 and can be ordered by contacting my friend Madlyn at madlyn.ferraro@ gmail com. Individual cards are $2.50 each.